RLS programme.: I watched the programme... - Restless Legs Syn...

Restless Legs Syndrome

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RLS programme.

hairyfairy profile image
36 Replies

I watched the programme about sufferers of RLS last night, & what struck me as strange was the fact that these people were suffering from a very severe form of this illness. Why hadn`t they gotten help from their doctor?

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hairyfairy profile image
hairyfairy
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36 Replies

Pure sensationalism unfortunately, that was only one of many horrible mistakes.

Madlegs1 profile image
Madlegs1 in reply to

Rubbish Raffs- they were actors!

Paid to ham it up to the extreme!!!

But then I'm a confirmed conspiricist- ( if there is such a word!) OED please note- you saw it here first!😂😈😎

in reply to Madlegs1

Do you know I thought the same thing! The woman kicking/rubbing her husband did not ring true at all.

in reply to

Then you are not a RLS sufferer if you do not understand why she rubbed her legs.

in reply to

And the bit where I said I do not understand why she rubbed her legs is....?

Pippins2 profile image
Pippins2 in reply to

Ha ha Raffs all these years masquerading as a RLS sufferer! !!! Lol.x

in reply to Pippins2

It hasn't been easy. I foolishly decided to pretent to have very painful RLS and in ordwer to keep the rouse going I've had to implant two very rare Himalayan Pygmay Tree Lobsters, very rare because they only live on a tree that lives on the top of Everest.

Anyway Alberto Del CAstillo Cabeza De Vaca and Maria De Los Angeles Ortiz Del Toro - the two lobsters bite my legs to give me pain sensations there and then they scout up the lift in my spine to get to the arm flappers they installed, (guys are genius at impro).

In saying that it hasn't been all bad. I've grown quite attached literally to the guys they are fun and Maria ah the voice of an angel, she would often lull me to sleep with some ballad her mother would have taught her in the trees high above the world as they fed on the carcasses of what ever climber they had killed that week, then rip thigh me with her claws just to make sure I wouldn't sleep too long.

Ah well looks like its back to accounting for poor Alberto now that I have been exposed as the RLS faking, sick people hating, baby eating monster that I am. I'll get me coat :(

Pippins2 profile image
Pippins2 in reply to

Oh now our secret is out we will have to find a new way to "keep meeting like this ".x

in reply to Pippins2

There do appear a sizeable portion of people who wrongly read my posts, make a derogatory remark and when I ask for them to point out where I said alleged complain they go silent! Not even a small I'm sorry!

in reply to Pippins2

Ahhh but I did reply and....

in reply to

Where you said kicking /Rubbing her husband did not ring true

in reply to

Ok rubbing legs on her husband .

in reply to

You say I know nothing about it -I've had it since infancy over 40 years. I have sat in agony looking at a pile of poison that I know who have had me dead in a few minutes - the pain exhaustion and hopelessness was overwhelming. The only reason I haven't killed myself is my kids.

Yet without even reading my posts to see what sort of person I am your anger and self-righteous anger took control of you.

You wrongly accused me of something I had not said and like so many people that are full of self righteous indignation you haven't even the courtesy to admit when you are wrong and apologise for your ignorance, even after your mistake is pointed out you still cling to your wrong assumption!

Thank God my children have been taught to read something before they make any silly comments and if they are wrong to admit it - lean from a 10 year old and corral that ego Katiemc!!

IF you had proper RLS and your partner/husband/gimp didn't like it why would you keep rubbing up against and kicking them? At the end we see her sitting with her legs AWAY from her husband which is a better solution, a different chair will be better again. This comment has been made on this site numerous times about this particular woman, have you gone to chastise all those posters too?

You were wrong about what I said, you accused me of saying something I didn't say because of your inability to read a line and a half of text and when I ask you to clarify where I said what you accused me off you repeated your initial erroneous complaint.

Have a bit of humility and understanding and admit you were nasty and have the decency to admit you were wrong and apologise!

Panic not I will offer you no more advice, (I've already tried to offer you support and help despite your attitude):

healthunlocked.com/rlsuk/po...

but I am not here to be abused by some troll so if we can leave it that you avoid my posts and I will avoid yours, that way I can give advice to those who need it and are willing to read a post before letting their self righteous indignation get the better of them!

in reply to

DearAttitude , my god , I came on here for the first time, don't really know how to use the site properly and in your RANTING you call me a troll, an erroneous complainant, self righteous and indignant , it is people like you who ruin helpful sites like this with your attitude of poor me, the only one who suffers, keep your stupid remarks in your stupid mouth. I for one will never ever come on here again. I would not want advice from the likes of you if you were the last person on earth. May your RLS win over your mouth.

in reply to

You make a false accusation then dig down when you are wrong!!

Your comments to me are nothing but trolling.

I pity you and would never wish you suffering of any kind let alone RLS. I hope you get help.

Mum27 profile image
Mum27

I thought the same thing , and i was expecting to hear more from the doctors.

Keena1 profile image
Keena1

I watched it too, that poor man inflicting so much pain on himself made me wonder why you didn't see these people taking expert advice and receiving some sort of medication to alleviate this terrible condition. (If they are in fact real sufferers)

Kaarina profile image
KaarinaAdministrator in reply to Keena1

Hi Keena, I can assure you that John is a real RLS sufferer and does so much to promote awareness of RLS. He was on Radio Nottingham for at least the second time talking about RLS on Monday of this week for example. Of course he has sought advice and is seeing a neurologist very soon. I know this because he posts on the RLS FB page and I listened to him on the radio.

Keena1 profile image
Keena1 in reply to Kaarina

Hi Kaarina thank you for clarifying. My apologies to John but there are so many programmes nowadays featuring actors and not real people. Re; previous comments!

I do think the programme lacked medical expert advice on how to deal with rls for the benefit of the viewing public and which medication was available for sufferers. I presume many thousands of rls sufferers tuned into this across the country and was left thinking - and?

i can't say I heard any of the sufferers on the programme explain what they were advised by their medical experts and which medication they had tried, which may have helped many viewers including myself.

Alexi

Kaarina profile image
KaarinaAdministrator in reply to Keena1

Hi Alexi, this programme was to raise awareness of RLS, the first programme of its kind on TV which in itself is a big breakthrough. It has certainly done this by seeing the increase in postings on here and also on the RLS FB page. All of the people on the programme were real RLS sufferers. There is the added complication that what works to help one RLS sufferer will probably not help another. We can all find out what medications, alternative treatments there are but in the end it is unfortunately trial and error. This forum is great for advice, help and support from fellow sufferers, some being incredibly knowledgeable on the subject. RLS-UK was mentioned on the programme and on the website there is a link to this forum. So those watching the programme can find help if they wish in various ways.

It would be great if there was another programme about medication etc.

Look after yourself

Kaarina :)

martino profile image
martino in reply to Kaarina

Hi Kaarina

Congratulations to all those who took part in the programme. I was a bit puzzled about the memory loss bit. I have never seen this mentioned before and just wondered how common this is?

in reply to martino

Extreme fatigue will damage memory recall and concentration. So you find it harder to remember and harder to lay down new memories.

Kaarina profile image
KaarinaAdministrator in reply to

Well explained, raffs, thank you.

in reply to Kaarina

What was well explained? :)

Kaarina profile image
KaarinaAdministrator in reply to

Your reply regarding PLMD and loss of memory....... ;)

Beckonwood profile image
Beckonwood in reply to Kaarina

I must have missed something. What was the name of this show and was it shown on TV in the USA. Just wondering because I suffer from RLS and have for years. I would liked to have seen it. I have tried all the meds out there and some worked for awhile but then either had augmentation or just stopped working. I find that Percocet now is the only medicine I can take that works. But am so careful with it because of its potential to be habit forming. But after using it for a couple of years just don't understand why people abuse it because while it helps my RLS it doesn't give me a high or whatever those who abuse it say it does. I find this forum very helpful.

Kaarina profile image
KaarinaAdministrator in reply to Beckonwood

The TV programme was shown in the UK on Channel 5 on 4 April at 22.00 hours and was entitled RLS Desperate for Help. Many were disappointed with the programme because it did not discuss medications and alternative treatments. It certainly raised awareness of RLS though.

Beckonwood profile image
Beckonwood in reply to Kaarina

I wish they would do something on TV here in the US. So far I haven't seen anything.

in reply to Kaarina

John is also a member of another RLS group I belong too so Kaarina is right he is a RLS sufferer.

Peterpillpopper profile image
Peterpillpopper

Just watched it on catch up - while I can relate to what they are going through and it gives some exposure to rls I think the programme was not very well made. You can tell that from previous comments that it seemed staged. Too many coincidences like the woman finding her husband self harming for the first time after many years while the makers were filming. Colleagues told me about the programme and they thought it was sensationalism with dramatic music and lacking medical facts. Did they mention dopamine? I have spent years trying to get my managers to understand my problems - they don't get it but I will be glad if they didn't watch this. I would love more programmes about rls and plm but less personalised and more medI call you based.

Pippins2 profile image
Pippins2 in reply to Peterpillpopper

Peter the programme was filmed over 2 years so the film crew spent many, many nights following John but choose to show the one night his wife woke up x

TobyTobias1 profile image
TobyTobias1 in reply to Peterpillpopper

I agree, was very disappointed, the lady who said it made her a prisoner in her home surprised me as the worst thing for a RSL sufferer is not being able to sit and relax... getting out and walking is far less stressful than sitting on a sofa kicking legs about wearing tight jeans. I have had RSL 20yrs, but diagnosed 12 years ago, done Ropinerole, Requip XL slow release, now on patches. My RLS always worse if I wear anything tight on my legs so even had to change my style of clothing.. I always have bare legs indoors... it really helps. Had hoped to get some tips on living with RLS and medications from the program...

Peterpillpopper profile image
Peterpillpopper

Medically based

martino profile image
martino

There is an interesting piece in the latest winter 2017 Nightwalkers from the RLS Foundation about loss of cognition in older men who suffer from PLM

Retren profile image
Retren in reply to martino

The latest Nightwalker in the US is also interesting in so much as the new rulings on opiates which give relief toRLS sufferers and is now going to be very difficult to obtain leaving a good many people to be without help. Retren.

welschrisby profile image
welschrisby

Because the doctors can only prescribe medication which help in the short term but make the condition much worse over time

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